Monday, July 13, 2009

Erica (Ericaop), undiagnosed bio

I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.

I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.

In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.

After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn't with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn't until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I'm fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can't control my emotions one day & the next I'm fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.

I was just about to give up & begin to reconcile that its just me & I'm crazy as the doctors want me to think until two weeks ago I saw an episode of TLC's Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing's Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.

After doing further research I decided I really want to see someone who is knowledgeable about Cushing's so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don't have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven't had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady's attention. I am scared that my labs will not show anything to warrant an appointment & I don't know where to go from here.

I don't have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.

Does anyone out there have any suggestions on what I should do?

Email Erica

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Beverly (bookyeti), undiagnosed bio

31 year old female, happily married, no children, owner/operator of at-home business (bookbinding) --- Loves reading, writing, bookbinding, camping, hiking/walking, kayaking, canoeing, photography, learning the guitar, singing, volunteer work

About 5 years ago I was diagnosed -- on a symptom & blood test basis -- with PCOS and Insulin Resistance. However, recent ultrasound results show no cysts on my ovaries; to quote my doctor “they’re pristine!” While I do believe I am Insulin Resistant, I believe PCOS is not causing my plethora of horrible symptoms...

After much research, I have found almost ALL of my symptoms point to Cushing's. You could say I look the part, as well...large buffalo hump, and moonface, after gaining about 70 lbs. over the course of about 5-6 years (despite a restricted calorie diet, 1500mg Metformin daily, and exercise). I have never had weight problems before. I’ve led an active healthy life and have never I stored any access weight in my mid-section, upper back or face/neck ...but that all changed about 6 years ago. My body has been transformed right before my eyes, and I no longer recognize myself. I’ve been told many times by doctors and endos that I just need to lose weight and I’ll feel better; but weight loss is nearly impossible, despite following dietitians nutritional guidelines and exercising. I will lose 5 lbs. and the next week, for no apparent reason, those pounds will be back. I was prescribed the highest dose of Metformin that my doctor gives out (1500mg/daily) and although it has helped with some of my IR symptoms (acne, appetite), others serious ones persist.

I have a doctor's appointment coming up and will be asking for a battery of tests to either diagnose or rule out Cushing's. I am so frustrated and want to finally know what is going on with my body and hopefully get an idea of what can be done!

Beverly added a second version of her bio:

Hello everyone, my name is Beverly. I am so thankful to have found this board. I’m 31 years old, happily married (no children), and living on the east cost of Canada.

About 5 years ago I was diagnosed -- on a symptom basis -- with PCOS and Insulin Resistance. However, my testosterone levels are normal and recent ultrasound results show no cysts on my ovaries; to quote my doctor “they’re pristine!” While I do believe I am Insulin Resistant, I believe PCOS is not causing my plethora of horrible symptoms.

After much research, I have found almost ALL of my symptoms point to Cushing's. You could say I look the part, as well...large buffalo hump, and moonface, after gaining about 70 lbs. over the course of about 5-6 years (despite a restricted calorie diet, 1500mg Metformin daily, and exercise). I have never had weight problems before. I’ve led an active healthy life and have never I stored any access weight in my mid-section, upper back or face/neck ...but that all changed about 6 years ago. My body has been transformed right before my eyes, and I no longer recognize myself. I’ve been told many times that I just need to lose weight and I’ll feel better; but weight loss is nearly impossible, despite following dietitians' nutritional guidelines and exercising. I will lose 5 lbs. and the next week (or next day), for no apparent reason, those pounds will be back. I was prescribed the highest does of Metformin that my doctor gives out (1500mg/daily) and although it has helped with some of my IR symptoms (acne, appetite), others serious ones persist.

My LONG list of symptoms are...

• Extremely Heavy Menses: started gradually from 5 years ago
• Extreme Menstrual Pain
• “Buffalo hump” Pronounced hump at the base of my neck. Tender and sore at times.
• Central obesity I have gained approx. 70 pounds in 6 years, gaining weight for over 9 years, notably in my abdominal area, upper back, and face area without any explainable reason (no extreme changes to activity level or diet)
• Hypertension. despite Metformin use
• Ultrasound denoted signs of Fatty Liver
• Ultrasound showed no cysts on ovaries
• Severe fatigue, weak muscles, lack of energy. “Hollow” empty feeling is how I can best describe it.
• Cystic facial acne (especially along jaw line, chest, back and pubic area) – have found that Metformin somewhat controls it.
• Roundness/puffiness of the face around cheeks/neck. Some days swelling is not as noticeable, while other days are very noticeable. Cheeks very round and unusual fullness around upper neck.
• Pink/purple stretch marks on the abdomen and upper hips/thighs and sides of breasts
• Headaches. Rarely had them before (less than a couple times per year), but have been getting them more in the past 1-2 years. At least twice a week if not more. Ibuprofen is used to manage the pain.
• Water retention and bloating so severe that I can gain 1-2 dress sizes in a day and lose it the next
• Inability to lose weight
• Elevated Triglycerides and Cholesterol
• Decreased libido.
• Increased Appetite – controlled with Metformin
• Flushing in chest area (bright red blotchy skin) even if cold
• Mood swings/Irritability. Sometimes content. Sometimes screaming and violent (throwing things). Very irritable. Easily upset. Little things set me off. Overwhelmed by the life's daily requirements. Frustrated easily. Totally against character for me.
• Occasional Blurry vision. There are times when I just can’t see clearly out of my glasses or contacts. I blink a few times, and my vision returns in 1-2 minutes. Recent eye exam indicates vision has not changed significantly.
• Bumping into things. Run into low objects, scrape door frames very regularly. Unsteady gait and balance issues.
• Stuttering. I feel like my brain is working faster than my mouth, and I stutter to get words and sentences out.
• Increased sweating – didn’t sweat much up until this year, I’m starting to notice a marked increase
• Depression, anxiety, isolation. Easily overwhelmed by change and stress.
• Locking finger – requires brace a night to keep it straight and prevent it from locking in a bent position (started 2 years ago).
• Swelling. Moderate swelling at times in my feet (ankles sometimes “disappear”)
• Uncomfortable at night with occasional hot flashes
• Frequent urge to urinate at night almost always at 4 a.m.
• Restless during sleep. Never feeling well-rested. More snoring in the past 2 years.
• More facial hair under chin and eye brows than normal. No other hirsutism noted.
• Darkening of skin between my upper thighs, arm pits, back of neck, under breasts
• Bruising easily. Slow healing. Mosquito bites, cuts, and scrapes take longer to heal and bruises last longer.
• Dry skin on arms and especially legs. Skin is extremely dry and scaly.
• Skin thin and sensitive in areas
• Thinning hair in areas (in the front)
• Rash – frequent small colorless bumps on backs of hands - no allergens known
• Chronic Diarrhea
• 'Normal' thyroid panel (taken in 2005) despite symptoms of mental and physical sluggishness, heat sensitivity, cold intolerance (hands and feet), fatigue, brittle/weak fingernails, dark circles under eyes.
• Low core body temperature
• Susceptible to Infections: I always seem to be sick. I catch whatever is going around. Weak immune system.
• Eye twitching, intermittent

I have noticed that a lot of these symptoms are casebook Cushing's. I have a doctor's appointment next week (July 23/09) and I am arming myself to the hilt with all my symptoms, my health history, and photos (as horrible as they are) to get some answers. I am almost certain that Cushing's is the culprit and will be asking for a battery of detailed tests to get to the bottom of this one way or the other.

If you've made it this far, thanks for reading. :) I have been encouraged by all your stories and successes and continuing battles against this horrible disease. I hope I will have some positive news to share soon.

Email Beverly

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Wednesday, July 1, 2009

Amber (AmberP), undiagnosed bio

Over the course of roughly a year in my early teens, I gained over 50 lbs., started noticing excess hair growth, and began having acne so severe that I was subjected to three full courses of a drug known as Accutane. Nothing had changed in way of my lifestyle or diet, and here I was all of a sudden with health issues presenting at the age of 13.

My dermatologist one day mentioned that my symptoms might be supportive of this rare disorder known as Cushing's and suggested I see an endocrinologist. I made my appointment, and the doctor ordered the standard battery of tests, including a 24 hr urine collection.

On that first appointment, she told me that my symptoms lined up very well with Cushing's, so they were going to test for it, but told me that day that it was something I didn't want to have as it usually involved having a brain tumor - but not to worry, it was extremely rare and it was very unlikely I would have it.

The tests came back and while my cortisol level was apparently at the high end of normal, she decreed that none of the tests showed anything of use, and that I should feel relieved that it all must just be normal teenage hormonal changes and that I should just focus on losing some weight. She'd scared me with this brain tumor talk, so I was happy to have this clean bill of health and moved on.

The weight gain persisted over the next few years, while the excess hair growth got worse and my periods all but stopped coming. I eventually found myself in endo #2s office. The first thing he mentioned after examining me is that my symptoms were increasingly in line with Cushing's, but since it had already been tested for, he didn't think it worthwhile to repeat the test.

After the battery of tests he did came back quite normal, he determined I must have PCOS, and began me on Actos. I continued on this for a few years as my symptoms became progressively worse. After a while of seeing no real benefit to this treatment, I eventually stopped.

Flash forward a few years and upon my mother's insistance, I find myself at endo #3s office at a major university. This gentleman asked all the same sorts of questions, and again the first thing he mentions is the possibility of Cushing's. I immediately go back to that day when I was 13, and let him know that it had been checked previously, so he too declines to test again. The other tests are mostly normal, though now it seems my blood sugar is slightly elevated, though just enough to barely be considered pre-diabetic.

He starts me on Metformin and asks me to participate in an intensive medical study for the effects of Metformin on PCOS patients. I agree, and after months of taking the drug, I'm told by the resident who acted as my liaison that it's odd because my symptoms are so dead on for PCOS, but there are no cysts at all, and my body doesn't seem to respond much at all to the Metformin. I stop taking the drug after this.

Symptoms continue to worsen, and in attempts at help in weight loss (which has become a very serious issue by my early 20s), I see endo #4. The appointment was like deja vu - exam, immediate mention of Cushing's, see I'd been tested for it previously (though it was 10 yrs ago at this point), then ran the normal endocrine workup and got the same results. Verdict: PCOS - begin taking Metformin again and low carb diet. So I did, and even after sticking to a 2000-2500 cal/day diet for almost a year plus taking the metformin, I only managed to lose 11 lbs from the 332 lbs that I weighed when I began this diet.

Frustrated, I - upon prompting from my PCP at the time (approximately a year later) - go see endo #5, but unfortunately found myself having the very same conversations, tests, and conclusions. I agreed to up my Metformin to the maximum dose and begin an intensive medically supervised diet through a company called HMR. I stayed with this very rigorous and expensive diet plan of 1200-1500 cal/day plus at least 30 mins of walking each day for around six months, managing to lose 47 lbs of the 350 I started with, but eventually had to step away from it because of the enormous expense involved and my inability to continue paying for it as a full time college student.

College was a busy time, and as time progressed, I found myself gaining back all the weight plus a few pounds and feeling progressively worse as the years went by. I began getting frequent skin infections - having to be hospitalized twice for cellulitis in my legs. I've had several bone fractures from what are normally very benign sorts of occurrences - each of my fingers have been broken at least once as have several of my toes, and I broke my foot twice, both from very simple falls. The excess hair growth got to be completely out of control, with the current need being shaving most of my face twice a day and plucking in numerous other spots. My blood pressure has come up to prehypertenion levels. My knees have begun causing issues and are quite weak. I've also been having fairly intense back pain, diagnosed as degenerative disc disease. My periods have all but stopped coming, having maybe 5 or 6 over the past 10 yrs total.

In the past year, I've begun having anxiety issues for the first time in my life that I’m now taking a low dose of Citalopram to control. I'm so weak and tired all the time it's a fight to even get out of bed most days. Recently I've begun being having serious bouts of weakness/dizziness that generally sync up with terribly awful headaches. I can barely even make it to work most of the time. In trying to do a bit of self diagnostic research after being tested for virtually everything over the years and doctors repetitively telling me that I just need to work on losing weight, I came back across the familiar word of Cushing's. I've always been afraid of it since that day when I was 13 and have never looked heavily into it consequently, but here I am reading the symptoms, seeing the pictures, reading all the stories, and all I can think is "oh my god, this is me". All the symptoms I've previously mentioned combined with the "moon face", the abdominal obesity with relatively slim legs and arms, and the "buffalo hump"…. Finally something that makes sense after 15 yrs of searching!

After doing my research last month, I call and schedule an appt with endo #3, who is now the head of the endo dept at a large university. I go in armed with information, and ready to have a serious discussion on the possibility of me having this disease. The first doctor with whom I spoke listened very patiently to my story and all of my symptoms, and agreed that it was worthwhile to test for Cushing's again along with a repeat of the normal battery of endocrine tests.

The main doctor comes in a few minutes later, asks me a few questions, and then says "well I can tell you that you don't have Cushing's because I would have found it 10 yrs ago when you were here if you did. But we'll go ahead and test to be sure." He orders a 24 urine collection and a low dose dex suppression test along with a 8am cortisol blood draw, and while I'm confused why he immediately tells me that I don't have it when I have had no testing for it short of one urine collection that was on the high side of normal 15 yrs ago, the testing that was ordered satisfied me enough that I didn't push when he said he didn't like the salivary cortisol tests, and didn't see the use in the midnight blood draws. I was very hopeful for weeks, and finally I receive a letter saying that everything was completely normal short of just slightly elevated testosterone and stated that I most definitely did not have Cushing's.

The only suggestions given were to up my Metformin back up to the max dosage and get in touch with a weight loss surgery specialist. In reading these forums, it really doesn't seem wise to stop at this point, so I call and ask if they'd agree to repeat at least the urine collection. I was told that there is no use, and that they could do no more besides get me in touch with someone regarding gastric bypass. I go to my PCP a few week's ago with the results and asked if he'd agree to order a few more urine collections if nothing else, and he point blank told me that if a specialist at a major university says I don't have it, I don't have it, and he won't assist in doing any more investigation.

I tried calling around to several endo's in my area after that with a shortened version of my story with the request to just have some more testing run, and no one will agree. I've started wondering if I'm crazy, but the stories on these boards let me know that I'm only one of very many with the same sort of back story, and that there aren't easy answers when it comes to this disease. It seems obvious that I need to have more testing done, but I'm completely at a loss as to what my next step should be all things considered.

My job provides great insurance and I’m willing to travel if there’s some real prospect of help elsewhere… but I have no idea who to call or where to go at this point!

Can anyone help point me in the right direction????

(MaryO note: Although Amber asks several questions, she didn't give permission for a link to her email address to be added to her bio)

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Sunday, June 21, 2009

Michelle (Michelle), pituitary bio

30 yof who was dx in April of 2009 with Congestive Heart Failure (CHF), one week later Diabetes, and one week later Cushings.

Doc says CHF and diabetes are secondary to Cushings and should go away after sx. Had numerous tests done to locate the tumor with no avail.

Took going to NIH to locate the tumor which is 7 mm and on my pituitary.

Surgery is scheduled for 7-29-09. Suggested to my doctor a few years ago that I had cushings...the weight gain, lack of a monthly cycle, infertility ( they told me I had PCOS after already having a child), etc.

They told me I had been reading too many books and that I did not have Cushings, it was too rare. I would love to see that doctor again after sx with all my records and tell her what a big mistake!!

Never assume anything just because it is "rare". Can't wait to get my life back. The last few years have been awful!

Email Michelle

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Saturday, June 13, 2009

Tanya W, undiagnosed bio

On my birthday, my new endocrinologist gave a name to my tormentor of the past 8 years - cushing's. I still can't believe it, I am stunned.

Eight years ago I was in pharmacy school and I had just had a baby. I never could breast feed after I had the baby, my milk never came in. I remember reading that it usually involved the pituitary when women can't breastfeed and I remember reading about cushing's and I thought 'Oh no, I cant possibly have cushing's! '

I was trying every crazy crash diet on the planet and couldn't lose weight. I never could get any sleep, I had night sweats, hot flashes, irregular periods, skin boils, acne, my teeth were falling apart, I started looking more pregnant than when I actually was pregnant, and I had what I thought was a knot at the base of my neck from reading text books all day long. I thought all my problems were due to having the baby.

When I complained about not being able to lose weight to my family doctor, she said "well if you are only cutting back a little and just walk arounf the block , you are not going to lose weight." I was so pissed. She assumed I wasn't doing all I could to lose weight! Meanwhile I was starving myself & exercising daily.

Several months later I met a patient with Pcos in a clinc while I was on rotations and she had irregular periods like myself. I thought aha! Pcos, that's what I have. I begged my family doctor to test my hormones. At first she wouldn't, then she finally relented. My labs were all messed up - I low testosterone and zero estrogen!

She referred me to an endocrinologist who gave the diagnosis of pcos after labs & an ultra sound. He put me on yasmin, spironolactone, and metformin. I did lose some weight on metformin, but I still felt crappy. Several years pass by, I've graduated pharmacy school, and I am working in the crazy healthcare system in a demanding high stress fast paced job in a busy hospital. I get pregnant again and stop my pcos meds.

Now my body REALLY goes off on me. My face starts to bloat, my skin and face become unrecognizable to me. After I have the baby, my teeth really start falling apart like crazy, my face turns golden orange, I get cold when everyone is hot, and hot when everyone is cold, I start having back pain, I start getting strange headaches, I become very forgetful, my periods become non existant, I become really irritable (almost insane really), I get yeast & vaginal infections every other month, the 'knot' on my neck is getting bigger (from bending over a computer monitor, I assumed) and my hair was falling out by the handful. What really scared me was my hair & teeth. I know it sounds crazy but I always had long super thick hair and perfect teeth (at least my dentist always said so) So I knew something was really wrong, but I thought it was PCOS and/or I was becoming diabetic.

I went to my family doctor who told me that it was all in my mind or due to stress and aging. At that time I was only 31 years old. I couldn't except that I was supposed to be geriatric at 31. Meanwhile I was seeing an incompetent endocrinologist that wouldn't even restart my pcos medications for me. I still get the feeling that she was waiting for me to slowly become diabetic so she could treat me for diabetes, because that was her specialty.

Any way, this past february 2009, my throat developed a lump that was rock hard and I could not swallow with out choking. My family doctor diagnosed me with 'thyroiditis'. I got fed up with my endocrinologist and switched to a new one. When I came to the first appointment, she read my chart, listened to my list of problems. took one look at me and said "Cushing's". I felt like I was slapped in the face or kicked in the stomach. I thought it was my thyroid, or diabetes, or pcos! I didn't even remember much about cushing's at that point, but I vaguely remembered from school that it was a disease that you did NOT want because it is not easy to treat.

Now I am in the wonderfully looong process of being tested, poked and prodded. My husband is a wonderful man, but he still doesn't fully understand. My family thinks I am crazy & making everything up, I feel like no one fully understands except for the women & men here. I pray for cure soon.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Romans 8:28

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Saturday, June 6, 2009

Verla (verlamom), Undiagnosed bio

My oldest daughter, Denise, has symptoms which I think are cushing's syndrome.

She has had asthma since an 8 yr. old child (now 45) with various inhalers, nebulizers, & bronchodilators & intermittent cortisone bursts of treatment--usually 4-6 months apart; at times a year between. For the past 4-5 yrs. has used Advair inhaler which was started at low dose & dose increased to currently 500/50 (high dose) twice a day for control.

Adrenalin for emergency use has not worked for her since she was 9 or 10. It seems her doseage need for solu-medrol & prednisone has increased when acute episodes occur--the last asthmatic episode occurred in Feb. 2009 when she needed a solu-medrol 100mg injection & prednisone 80mg in slowly tapering off doses. She does not regularly take any oral or injectable cortisone--just the inhaler of Advair.

She has slowly been gaining weight during the past year, but in the past 2-3 months has gained 40#, particularly in the upper torso area. Her breasts are huge, she has a fatty area at the back & neck, her face is rounded with swelling at temple areas because she has trouble with her glasses getting over that area (usually wears contacts as her eyesight is extremely near-sighted--had bi-focals when 8 yrs. old). Her eyesight has been getting progressively worse in the past month & in the last week has gotten extremely light sensitive, eyes swollen nearly half-shut, blurring, & peripheral vision not good. Saw an optomotrist Fri. June 5, 2009 & will be getting new contacts Mon. & using eye drops for irritation of one eye. Wearing dark glasses all the time in addition to contacts. Has headaches constantly, over the past 3-4 weeks have been getting worse--not migraine she says, but much like increased intracranial pressure like she had following a myelogram 8-10 yrs. ago (developed a spinal fluid leak & lost so much fluid that her brain stem was pulling down into the foramen--received a blood patch & it then sealed & things became normal).

She's had 4 back surgeries with 2 of them being fusions, diagnosed with PCOS with emergency surgery for a huge cyst which ruptured as they opened her abdomen; hysterectomy for endometriosis, etc. about 4 yrs. ago.

She has extreme fatigue--is an RN who generally loves her work but is having a very hard time getting up in the morning & can sleep at any time. Does sleep at night. She says that her thought processes are not as quick & feels "mentally slow." Has bruising & bleeds easily, occ. flushed face, stretch marks but not colored.

She had seen 3 different GP's--got in to see her PCP finally who at least listened to her. He ordered an MRI of pituitary on May 30, 2009 which was read as normal as well as a lot of blood tests. She also has an ovarian ultrasound & a low dose dexamethasone suppression test--so far all the tests have been in the "normal" range. At present no salivary cortisol or 24-hr. urine test done & no adrenal scan done. Thyroid testing has shown considerable change (TSH from 4.5 about 8 months ago to 1.8 about 2 wks. ago).

Was referred to endocrinologist who she saw on June 3, 2009 who did little to nothing from my perspective--drew more blood (if this was the 1700's she should be well with the "blood letting"). He told her the lab wouldn't come back for a week--He was in Lincoln, NE & so is the lab--don't know why it takes so long. He prescribed premarin without telling her & it was simple at the pharmacy when she got her eye drops yesterday. Apparently, in answer to a question, she told him she sweat a lot. He's not on my list of preferred doctors. One of the early doctors, not her PCP, told her to go home & lose weight & have a sleep study; another has referred her to a rheumatologist.

We are very worried about the escalation of the symptoms & the severity of her headaches & vision. We are thinking of asking for a referral to the Mayo Clinic--we hope there are good endocrinologists/Cushings/whatever doctors there. I have found that a Dr. Young is a specialist in Cushings. Denise's mood varied from thinking she's a hypochondriac when the tests come back negative & knowing that something is dreadfully wrong. She also has felt that she might faint at times with a kind of dizziness.

Any advice would be appreciated. Thanks.

Email Verla

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Tuesday, June 2, 2009

Jennifer (JWOLF74) PCOS bio

I was diagnosed with PCOS about 10 years ago.

Had gastric bypass surgery 7 years ago and in the last 2 years have packed on the weight again, cortisol blood tests were high, and did a UFC, which came back at 47, which is < 50 for the 'possible' diagnosis, but my doctor is going to refer me to another endocrinologist, because she isnt sure if its PCOS, or something else..... so, HERE we go again.

Update June 2, 2009

Approx 10 years ago, I was diagnosed with PCOS, due to high androgen levels, and insulin resistance, infertility.... I was told, 'Lose weight and everything will be fine.' So, I researched different ways, did every diet you can think of, all to no avail.... i would lose 20lbs.... gain 30...
In 2000 I decided on GASTRIC BYPASS Surgery..... NOW- Dont get me wrong.... I would NOT be alive today, if I had not gone this drastic route, BUT- the complications are many, and varied..... and they blame all my current issues on THAT, when IN FACT, I know..... there is more to it....

"You are bipolar... Aneamic, Vit b12 deficient, Vit D deficient' ...... Varied symtoms include and are NOT limited to: UNcontrollable sweats, edema- which causes swollen hands and feet, which in turn cause BURNING ITCHING in said hands and feet, headaches that LAST for weeks at a time.... poor sleeping, wake up 3-4 times a night (subsequent Sleep study revealed -- i woke up 28 times that night) -- Snoring, but, NO sleep apnea. Sores on face, in ears, on scalp that during times of 'stress' CANNOT be relieved. Oily, but DRY skin. Psoriasis on knees, elbows, and sides of nose, IN ears. Optic Nerves that are TWICE the size of any 'normal' person, Glaucoma suspect (pressure ranges between 9 and 22 - on any given occasion) --

I HAD big UGLY stretch marks on my abdomen--- before my panniculectomy in 2004 --- they got cut off.... =) i just thought they were.... STRETCH MARKS.... cause my belly was so fat....
As a child, i was hospitalized at the age of 6 weeks for pneumonia, and my 'hump' 1st appeared between 8 and 9 --- i also had a 'lump' on my forehead that doctors dismissed as - sinus related, due to many boughts of bronchitis, and pneumonia and subsequent tonsilectomy.... adenoids removed-- GREW BACK, had to have removed again.

menstrual irregularities began at age 12.... within 6 months of onset of menses.... weight ballooned... by the age of 18 --- i was over 200lbs.... by 25 -- well over 300lbs...

by 28 --- over 400lbs.... at 5 foot 8 --- not THAT big a deal, but, the energy was NON-existent..... life was slipping away.....

In 2000- doc checked CORTISOL --- it was in the middle of the day --- and it was 39 (serum) --- had my do UFC--- and it was 'normal' -- according to records....
LABELED AS: PCOS --- end of story.

Till now.... weight is creeping UP.... despite 1100cals a day ...... Sleep again..... all messed up..... HEADACHES almost daily...... sun makes me wanna cry, but the pressure from 'rain' and damp days makes me ache like there is no tommorrow.... face broken out.... hairs on my chinny chin chin have gone from ..... a spackling to.... a BEARD.... Charly horses in my calves, thighs and lower back.... and a NEW ONE---- in the back of my right arm....

Energy ??? Whats that ...... remember something ???? HA, what a joke.... i forget stuff from room to room.... and my house is only 1000 SQ FEET.... and even now, I am sure i am forgetting SOME symptom .... =)
recent tests:

SERUM CORTISOL -- 8AM: 27 (ref range high is 22)
UFC- 42 (ref range < 50 )

ACTH - 8AM Fasting: 46h reference range is 7 to 27
Serum Cortisol 42h ref range: 4.6 to 20.6
UFC 37 ref range 4 to 50
17-OHP < 8 (any phase menstrual cycle s/b 285 )

Email Jennifer

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Wednesday, May 27, 2009

Naira (nairav323), undiagnosed bio

I have just been diagnosed with PCOS and I am now waiting to find out if I have Cushings.

I realy feel that I have all the symptoms and the physical appearance of Cushings. In some ways I realy want to be diagnosed with it so that I can finally put a name to all of the symtoms I have experienced over the years.

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Saturday, May 16, 2009

Melanie (Melanie W), undiagnosed bio

Hard to know where to start. I think I am cyclic cushing's.

I think it started when I was a child(7-8 years old). 2 years ago I was diagnosed w/ PCOS. Last year, mild hypothyroidism.

Summer of 2008, had UFC of 68.
Dex supp. test--0.7.
Salivary cortisol AM-13, MN--3.
Feb/09 UFC--24.9.
April/09 Salivary cortisol AM--10, MN--4.

Buffalo hump getting bigger. Facial hair for years(electrolysis for years-ouch!). Male pattern balding. Polyps in uterus. Weight usually 200lb, unless severe diet and exercise, then 180.

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Tuesday, May 12, 2009

angelp (angelp), pituitary bio

My bio - I don't realy know where to start... I've been diagnosed for 6 months now after years of symptoms (the hump, belly, very thin hair, straie all over, bruising, confusion, exhaustion, weakness) to name but a few, but things seem to have gotten worse since my first pituitary surgery in January this year, that failed to cure me, i became ill with staphicoccal septisemia and was hospitalised for 3 weeks.

My second pituitary surgery in March, again failed to cure me, aparantly they can't get all the tumor.

I'm having an adrenalectomy in a month or so and then I must have radiotherapy to get rid of the rest of my pituitary tumor.

I feel like my life is over, I feel so old, all my joints hurt alot and it's difficult to move around - is there ever an end to all of this?

Email angelp

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Monday, May 11, 2009

Sue (Sue), undiagnosed bio

Hi.. I'm so glad I've found this sight! It helps to know that you are not alone.

I've was diagnosed with PCOS a few years ago and have been dealing with those symptoms since. However, in the last couple of years, things started to go downhill! ..

Experienceing the typical Cushing's smyptoms. I remember I gianed 30lbs, in what almost felt like a week! Thinning of the skin, bruise easily, neck hump, etc.All of the classic symptoms. I started doing research and found out about Cushings...never having heard of it b4.

These past few months I've had numerous tests, confirming my cortisol levels are very high. So then the search began to find the source. Adrenal problems were dismissed due to the test results. I've had an Mri which found nothing on the pituitary, as well as a Cat Scan of the chest/lungs.. and nothing.

And so this is where I'm at.. very frustrated and confused. Doc is requesting I get yet another MRI..of the pituitary and then possibly a Petrosal Sinus test, which I think is very invasive and I rather not do!

He is a specialist in ednocronology and works with specialist in Cushings.. could the cronic high level of cortisol be caused by something else other than a tumor?

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Sunday, May 10, 2009

Vanessa, pituitary bio

Hi, my name is Vanessa, I live in Phoenx, AZ.

I have recently been diagnosed with a piluitary tumor. This nighmare started about two years ago, I started gaining a lot of weight and feeling very tired. I went to my doctor who tested my thyroid and said I was hypo, the medicine helped with the fatigue but not the weight. I was constantly complaining to my doctor about my weight since I worked out daily.

Three weeks ago I went back to my doctor and she thought I had PCOS, a blood test was run and my cortisol levels came back high, a 24 hour urine test and an MRI revealed a putulitary tumor. I'm very scared and feel like this whole sitution is sureal.

I am currently seeking in endo in the area. Any recommendations would be greatly appreciated.

Email Vanessa

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Sunday, May 3, 2009

Luisa, undiagnosed bio

I would like to begin by letting everyone that participates in this site know how much they are actually doing for people. I don't see how I could have made it through the last several months without this site. I am 27, and have recently been diagnosed with Cushing's. What type I am unsure as of yet, but should have more answers in a few weeks.

As many of the women here, I have been plauged by a group of symptoms that has gotten progressively worse and worse. After dozens of trips to the doctor for what was seemingly unrelated instances, I finally began researching my problems as a whole. I began this part of the quest in early February when I (with my extremely supportive mother) sat down with my PCP and told him I needed help. The weight, skin problems, purple stretch marks, excess hair where it shouldn't be and not enough where it should....the list is very similar to many others here. In addition, the burden of trying to manage all of this with the emotional repercussions was growing too much for me to handle.

My doctor was understanding, and said he thought I had PCOS. Having been on birth control pills continuously for almost ten years, I had no idea whether my cycle was actually normal or not. He immediately wrote me a prescription for Aldactone, said we would consider Metformin the next visit depending on my labs, and sent me for blood work and an ovarian ultrasound.

I left the office feeling as if a weight had been lifted off of me. There was hope for me yet, and for all of my terrible symptoms that for so many years the medical profession had been attributing to me letting myself go, or just getting older. After several weeks, with the blood work and ultrasound complete, I received a call from my doctor. All of my labs were normal. In fact, my testosterone, which we all expected to be through the roof, was actually a little low. The ultrasound showed not even a trace of an ovarian cyst, perfectly normal.

At this point I began to question my sanity. How could I have hair growing in the places it was growing with low testosterone?!?! Needless to say, my doctor said he suspected that I had some sort of adrenal disorder, not PCOS, and referred me to an endo. After this phone call, I googled : Adrenal disorder misdiagnosed PCOS. Here is where I ended up, and turns out that three months of doctor visits have confirmed that I am indeed in the right place.

The first physical exam was exciting (to be getting somewhere) and just as embarassing. Waiting for my initial bloodwork was agony, although I knew what it would show. I knew the course of tests that would follow, and have been dead on so far. My plasma cortisol at 10 am was through the roof....then we moved on to the 24-hour Urinary Free Cortisol Test....which again was through the roof. We followed up with the midnight salivary test, which fell right in line as abnormally high.

This coming Wednesday, I will complete the Overnight Dexamethasone Supression Test. I am anxious, terrified, and excited. I am so hopeful that there is a possibility I may get my life back. I wish my life had a fast forward button....I don't want to live this life anymore, I want my life back. I used to be beautiful, happy, and confident. Now I just want to live in a cave and never have to interact with another person.

In the midst of all of this, my fiancee cheated on me. Talk about kicking someone while they're down....I have learned a valueable lesson; Just when you think it can't get any worse, it can, and it does. I certainly don't mean to emphasize the negative, but sometimes it's too much to handle. I am so very thankful for all of the selfless and wonderful people involved in this site that have told their stories. I honestly don't think I could make it through a day without this site, it, along with the best mom in the world have been my rocks, and I can't express my gratitude enough.

To those who may read this, there is hope for you, and there is hope for me too. The process of diagnoses is painfully slow, and the thought of dealing with your symptoms for any longer is miserable, I know. But, lets rely on each others stories and experiences for support. I will update as I learn more, and anyone please feel free to contact me, and thanks again to everyone.

Email Luisa

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Wednesday, April 22, 2009

Kirsty (kirstymnz), ectopic adrenal bio

I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing's syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing's.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing's was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing's disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Email Kirsty

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Sunday, February 8, 2009

Lorrie (lorrie), undiagnosed bio

I am 31, mom of 3 in St Louis,Mo

What got me to this point was my missed menstural for 1yr. I finally broke down, stopped fighting husband that it was "because of my weight gain" (218 as of Nov.08)

So I go to the gyn she's freaked, "Why would you wait this long?" My answer periods have not ever been normal since birth of first daughter in 97, (son in 98 and daughter in 05) Just assumed cycle was changing at first or just because I couldn't loose the baby weight and then some.

She sends me for labs and tells me she thinks it could be early menopause or PCOS. Needless to say that labwork was abnormal and straight to the endo she sends me.

While being examined by the endo she is asking me about the pink stretch marks on belly(thought they were just from baby never really look at them)and the hump on the back the amount of weight gain in the past two years, depression (I did take med for before I got pregnant with #3- for a few months stopped when I found out) out of control mood swings, exxxtra facial hair, tired all the time, etc... anyway she just sort of mentions the cushings and sends me for more blood work...

Tests come back so many numbers and words that I really had no clue of blood sugar-high, testosterone-high, cholesterol-high, cortisol-high just getting #s thrown left and right.

She tells me she believes it is PCOS as well but we should check the thyroid(which is where my $ was on), so more tests and now ultrasounds of thyroid (1cm lump has to be checked again in 6mths) and ovaries (they are just fine I was told which really threw my question mark up).

In the meantime I started doing my homework and cannot believe that all signs have pointed to Cushings Syndrome WOW!!

Next thing I know I am checking my blood sugar everyday and put on metformin, changing the foods I eat- she put me on birth control, which I have never been on before and honestly still haven't taken them.. to much fam history of heart disease and stroke may sound crazy I am just not sure about that yet, which may be a good thing, I read that it may effect some test results with the cortisol..

Now I am into a week waiting on the 24hr urine and midnight saliva results. . the waiting is so frustrating especially when I absolutely w/out a doubt know that it is cushings!

I have read and read so many stories and cried and just in aww of how many of the symptoms I have and going back to 1998 after my son was born, the stress factors and the health problems and so on and to well, starting to put the pieces of the puzzle together. I still don't think my head has stopped spinning!

I think every story I read is almost like reading my own. I just need to get copies of all my labs and really learn the lingo and what levels are or should be what.

I am having a hard time with actually admitting to family members what the problems are with me because I sound like such a hypochondriac ,how do you get past that? I am such a mess emotionally and it's getting harder and harder to choke back the tears plus when test results do come back when and how do I tell my 10 and 12 yr old about this- not in any rush for that- but I feel like there is soo much that I nedd to prepare for I just don't know where to start.

Any responses are welcome please.

Email Lorrie

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Sunday, February 1, 2009

Tammie (makeitgreen), PCOS bio

I am a 39 year old married mother of two children ages 5 and 6 and have had hormonal issues since childhood. I stumbled upon this site in search of information, support, and ideas on how I can improve my quality of life while I search for a good endo and get a proper diagnosis.

In elementary school, my poor parents didn't know what to do with me. I forgot everything and must've driven them crazy. I got lots of spankings for fogetting things. My hair grew slow, and I was short and tiny for my age. As I got older, I did not develop breasts or get my period until I was 17. The next one was 9 months later. Looking back, this was probably the first REAL clue that I was having hormonal issues. I've NEVER had regular cycles, even as an adult, unless I'm taking birth control meds. When I graduated high school, I weighed 103 lbs.

As a young adult, I did finally develop and my "pooch" ~ that little fat on the midsection ~ started growing. It was slow and gradual, nothing alarming, and I was still tiny. I took birth control pills throughout my 20's in order to have regular periods. During that time in my life, the hormonal imbalance was minimally disturbing, and an unofficial diagnosis of PCOS was all I needed to know. I did what the doc said, that is, I took my BC pills and everything else was pretty much normal.

Around 30 I married and wanted to have children so I went off the birth control meds and started seeing an Endo. I was officially diagnosed with PCOS after having an ultra sound that showed the tell-tale pearl-like string of cysts in both ovaries. He put me on glucophage, the newest, most exciting clinical treatment at the time. Glucophage made me nauseated and gave me diarrhea and did not help me with infertility. In fact, I think all it did was make me sick to my stomach and I gained weight while taking it. After a few months of this treatment, I got disgusted that the Endo was not helping me and that I was only one of his guinea pigs for his clinical study on the effects of glucophage, so I started looking for a new doc. His only requirement was that he agreed on the phone that he would prescribe clomid.

Clomid worked like a charm. By following a calendar, I planned the next months around my cycle and got pregnant the second month I was on clomid. We were thrilled! Of course, the pregnancy brought my hormonal imbalances to the surface and I developed insulin dependant gestational diabetes. I had two children and was insulin dependent with both.

After my second son was born, I began to have symptoms of depression and fatigue. I slept all the time and cried alot. The doctors put me on thyroid meds because it was low, and over time, welbutrin and provigil, which both helped, but were masking the real problems. When I moved, I had to see a new psychiatrist who decreased my provigil and tried to diagnose me with manic depression. He wanted to put me on yet another psychotrophic drug. That was the day I quit taking all my meds.

Over the next couple of months, my depression returned and I had absolutely no energy. I went to my GP and told him everything. I wrote it all down in bullet format and told him that I thought I had a hormonal imbalance since childhood. He's truly been great, but he's sooooo SLOOOOWWWW. He will only check my bloodwork every 6 weeks, and increases my thyroid by only 30 mg each time. The last time I had bloodwork done, my thyroid was low, but he had his nurse call me and tell me it was normal and would NOT increase my meds.

This made me extremely depressed! If my bloodwork was normal, then why the hell did I feel so rotten? And why was I getting more and more tired and dizzy every day? I made an acute care appointment with the next available doctor and she basically laughed me out of the office. I went home, cried alot, did some research and went out and bought: St. John's Wort, DHEA, a stress vitamin loaded with vitamin b's, iodine (kelp), and a multivitamin. I took all those along with my thyroid meds for two days, and got so sick and dizzy that I went in for another acute care appointment. This doc also basically laughed me out of her office (actually, she was clearly PISSED OFF that I came in again for the same thing) and told me to go to ER.

I did go to ER, that was two days ago, and they diagnosed me as having vertigo!

I will post updates as they are available, since I live only 2-3 hours from some of the doctors noted on this site, I will be going to see one of them soon. Honestly, at this point I don't even care if my insurance will pay or not. Somehow, I'm going to get help from someone who actually believes I have something wrong.

Email Tammie

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Saturday, January 24, 2009

Sarah (saskgurl26), pituitary bio

my names sarah i am 26 i live in biggar saskatchewan in canada..2 years ago i was diagnosed with pcos, there were treating it and i was getting worse..

I started getting headaches and blurred vision almost everyday..So my gyno ordered a cat scan, when the results came in from that they said that they see a tumor but u need to get a mri done so they can have a better look, in the meantime i had blood test fro thyroid , prolactin ect..

Results from the mri showed i had a macroademia.. MY bllod test came back i had slightly high levels of prolactin, so they said u had a prolactinoma and put me on a surgery list to remove it, i got a phone call from my endo saying i didnt need surgery u just need to take dostinex and the tumor should shrink..

Well i was getting sicker i had to take sick leave because of work still no menstrul cycle headaches everyday, nausea, gaining weight like mad but hardly eating,seemed that the dostinex was making me feel worse i was getting upset because
the docs were looking at me like i was making things up, but really i wasent..

About three month later i was feeling terrible i ended up noticing a hump growing on my back and facial and back hair i never had today.. i also had tons of red strech marks on my stomach and my armpits and breasts,one day my mom calls me and says you need to go onto google type in cushing disease and read the syptoms, so i did, and i had every single symptom except for high blood pressure..

So i made a apt for my endo and asked her if it could be cushings , she said yes that sounds about right, i took a 24 hour urine and a dexomethane blood test and results came out that i had very high cortisol..Next i did the 3 day dex test, and yup sure enough it is cushings disease..

My endo booked me a apt with the nuero surg, who put me on a urgent list, twelve days later i had surgery..well my surgery was on nov 12th 2008..

I am still sick, still have bleeding in my nose and my nuero cant see me until feb 24th cause he is on vaca, i mean really tho i still havent even had a post op apt with him..

As for the cushings i am off of the steroids and feeling like crsap, some days i cant even get outta bed... I just had a triple bolus test done and i have high tsh and prolactin level, my apt is tues to discuss the prognosis yay what next, still have lost any weight well 5 pounds, still have a moon face, i will prob have the facial hair forever, but the sore muscles and headaches and nausea has got to go i am tired of being tired, but i am a insomniac so i cant even sleeo in the day..thanks for listening ..Sarah..

Email Sarah

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Sunday, December 28, 2008

April (April), undiagnosed bio (PCOS)

My name is April...I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very "very high" according to him, with regular female hormones "slightly out of whack."

I am so condufused at have no idea where to turn. I found this board and in reading the bio's it was like reading "my story". I have felt like I am going crazy and no one understands...including my unsupportive husband.

My history...
2 children...premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
Underwieght (5'2...100 lbs) but have "spare tire" around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn't work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that's normal for person my size.
No sex drive.
Don't like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on...

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn't ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send...

Email April

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Friday, December 12, 2008

Natalie, undiagnosed bio

I have not been diagnosed with Cushing's, but I have been diagnosed with PCOS. I do not think this diagnosis is correct however. I have only ever had one cyst on my ovary.

After searching on the internet for another diagnosis, I came across cushings. I believe that I have this because I have alot of the symptoms. I am very overweight, even when I used to be very active and healthy. I never lose weight. I have stretch marks all over my body. I have spasms, and heart palpatations which I read can be a sign of adrenal gland problems. I have irregular periods. My periods tend to be very long when I have them, (This one has lasted for nearly since the end of august and it is now the middle of december.) then they go away for a few months. I have thinner arms and legs, while my middle is large. I have what is often refered to as a buffalo hump, and fat above my clavical. My face is round, and I have a double chin. I have alot of the other symptoms to.

When I was younger my doctors were concerned that I had a tumor on my pituitary gland, but I was never able to get an MRI. I don't know if this has anything to do with it, but I had to have surgery on both of my eyes due to strabismus. I heard that cushings can cause vision problems, but I don't know if strabismus is one of them.

If you know anything that you think will help me, please e-mail me.

Email Natalie

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Monday, December 8, 2008


Dear friends, I've made every possible test in these months, and I don't have cushing.

I'm only an obese woman with PCOS, high blood pressure, insuline-resistence (thanks to this, even if I'm making the diet, I don't succeed to lose many Kilos and moreover I can't take the medicine for the insuline-resistence because my transaminases are still high) without diabetes (my glycemy after three months of diet is in a normal range). Now 'm not happy...

In the end, I wanna wish you a wonderful Christmas day and a new year full of victories.

Email MariaLaura

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Thursday, November 6, 2008

Megan (meggers317), undiagnosed bio

I am a 25 year old woman from MN looking for answers!

In high school I started to become concerned that I had not gotten a period yet so during my senior year I went to the dr who told me not to worry about it and prescribed birth control pils. It worked, my first period lasted 4 weeks. I had some pelvic/lower back pain so I had a pelvic ultrasound done and it indicated I had PCOS. And that was the end of that conversation. My dr told me not to worry about it until I wanted to become pregnant.

In 2006 after I had graduated from college and moved home I noticed I had gained about 20 pounds. My weight fluctuates up and down 10-20 pounds so I din't think much of it. Late 06 early 07 I had sudden and severe anxiety and depression. I couldn't drive my car without having a panic attack about whether the light would turn red and would I have enough time to stop. I avoided going out in public because I thought everyone was staring at me. I would cry about everything and anything. I was put on effexor and got immediate relief although I eventually detoxed from it a year later (not pretty, this is a very addicting drug!). Within the next 6-9 months I gained 50-60 pounds. It felt like overnight and I couldn't explain it. I've never been skinny but I was always curvy, not fat! I went on walks everyday on my lunchbreak, used an elliptical for an hour every evening and hadn't changed my eating habits. My hair became coarse, would break mid shaft, and in some areas simply fell out. This was probably the most devastating, as I have always had shiny, healthy, beautiful red hair that strangers would compliment me on. I had embarassing pink stretch marks on my belly,hips, boobs and upper arms (the areas I gained all the weight). Round puffy face, whiskers on my chin, oh yeah and did I mention a complete loss of sex drive...nada.

I finally went in to the doc this April 2008 to address all these issues but left with a new one... I had a large tumor involving the whole left lobe of my thyroid. It was benign and my thyroid was functioning despite it but due to its size it was removed. Also during this time I found out I had elevated liver enzymes, white blood cells, and C Reactive Proteins. No idea. Meanwhile I was just living with my symptoms thinking I had PCOS and there was nothing I could do about it.

In September of this year I read an article in Reader's Digest about a woman who was misdiagnosed as PCOS but later found out she had Cushings. The only time I had ever heard about this before was in a college Anatomy class. I was shocked to find so many similarities in our symptoms but got stuck at the Buffalo Hump. I brought the article home and had my fiance read it. He said yup that's you! I jokingly asked if I had a hump on my back and he said yeah I thought you knew that! OMG I just about hit the floor. I ran to the mirror and sure enough I got a decent size hump back there. Unbelievable.

So now its November and I've finally made an appointment to go back to re-address the symptoms and push for diagnostic tests. I have accumulated more symptoms: skin tags, weak arms and legs, bug bites that take months to heal, eczema on legs, the list goes on and on... I am so hopeful that I can get some answers.

While I don't want Cushings, I would rather have that than PCOS because I feel like PCOS is a lifetime sentence of fat and fertility problems. At least with Cushings I feel like I can get it taken care of and return to some normalcy. Demented? Maybe but I would give anything to have my old body and beautiful healthy hair back...and my fiance would love for me to bring some sexy back :).

Keep ya posted!

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Thursday, October 9, 2008

Marcia (Marcia K), undiagnosed bio

Hello everyone! I have been diagnosed with PCOS for 15 years. I am 48 years old and have many of the cushing's symptoms and have had them most of my life. I am on appropriate medicines for PCOS due to research I have done on blogs like this one.

I am here to learn more about Cushing's as I believe I have this and my appointment with an endo is 6 weeks away and I want to go to this visit with much needed knowledge.

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